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OBJECTIVE: This study investigates the relationship of child, caregiver, and caring context measurements with the care-related quality of life (CRQoL) and health-related quality of life (HRQoL) of caregivers of children with juvenile idiopathic arthritis (JIA). METHODS: We performed a cross-sectional analysis of baseline data on caregivers of children with JIA from Canada and the Netherlands collected for the "Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases" study from June 2019 to September 2021. We used the CRQoL questionnaire (CarerQoL), adult EQ-5D-5L, and proxy-reported Youth 5-Level version of EuroQoL (EQ-5D-5L-Y) to assess caregiver CRQoL, caregiver HRQoL, and child HRQoL, respectively. We used a multivariate analysis to assess the relationship between both caregiver CRQoL and HRQoL and patient, caregiver, and caring context measurements. RESULTS: A total of 250 caregivers were included in this study. Most of the caregivers were from the Netherlands (n = 178, 71%) and 77% were females (n = 193). The mean CarerQoL scores was 82.7 (standard deviation (SD) 11.4) and the mean EQ-5D-5L utility score was 0.87 (SD 0.16). Child HRQoL and employment had a positive relationship with both caregiver CarerQoL and EQ-5D-5L utility scores (p < 0.05), while receiving paid or unpaid help had a negative relationship with both scores (p < 0.05). CONCLUSION: Our findings indicated that to understand the impact of JIA on families, we need to consider socio-economic factors, such as employment and support to carry caregiving tasks, in addition to child HRQoL.

Introduction: Health-related quality of life (HRQL) is an important outcome in burn care and research. An advantage of a generic HRQL instrument, like the EQ-5D, is that it enables comparison of outcomes with other conditions and the general population. However, the downside is that it does not include burn specific domains, like scar issues or itching. Adding extra items to a generic instrument might overcome this issue. This study explored the potential and added value of extending the EQ-5D-5L with a burn-specific item, using a itching item as an example. Methods: The EQ-5D-5L and the Patient and Observer Scar Assessment Scale (POSAS) was completed by adult patients 5–7 years after injury. A separate POSAS itching item was used to study the added value of an itching item for the EQ-5D-5L. The EQ-5D-5L + Itching was created by adding the POSAS itching item to the EQ-5D-5L. Five psychometric properties were compared between EQ-5D-5L and EQ-5D-5L + Itching: distribution (e.g. ceiling), informativity cf. Shannon's indices, convergent validity, dimension dependency, and explanatory power respectively. Results: A total of 243 patients were included, of whom 49% reported any itching on the POSAS. Adding an itching item to the EQ-5D-5L decreased the ceiling effect, and resulted in increased absolute informativity (H’ = 4.76 vs. H’ = 3.64) and relative informativity (J’ = 0.34 vs. J’ = 0.31). The extra itching item decreased the convergent validity (Spearman's rank correlation coefficient = −0.51 vs. −0.59). Mutual dependency of dimensions existed, showing that all other items were dominant over the itching item. Adding the itching item to the standard EQ-5D-5L barely improved explanatory power (49.3% vs. 49.0%). Conclusions: PThe present study showed adding a burn-specific item to the EQ-5D-5L is possible and has potential. However, 5 to 7 years after injury, adding an itching item to the EQ-5D-5L provides little additional information; the gain in terms of added valu

Objective: This study explored the additive value of the multi-item EuroQol 5-Dimension 5-Level (EQ-5D-5L) as an outcome measure in health inequality analyses, relative to the single-item EuroQol visual analog scale (EQ VAS). Methods: A sample comprising the general population from Italy, the Netherlands, and United Kingdom (UK) completed the EQ-5D-5L and the EQ VAS. The level of education was selected as a proxy for socio-economic status (SES). EQ-5D-5L level sum scores (LSS) were compared against EQ VAS scores. Stratified and multivariable analyses were used to study the associations between SES and the LSS/EQ VAS relative to the presence of chronic health conditions. Results: A total of 10,172 people participated in this study. In the UK and Netherlands, the LSS was worst for respondents with a low educational level and better for respondents with middle and high educational levels. For Italy, the LSS was best for respondents with a middle educational level compared to respondents with low and high educational levels. The same patterns were observed for the EQ VAS, but differences were slightly smaller. Multivariable analyses showed generally stronger predictive relations in the UK, and with the LSS. The presence of chronic health conditions and being unable to work were independent strong predictors, canceling out the effects of education. Conclusions: In three different European countries, the EQ-5D measures show the presence of education-dependent health inequalities, which are universally explained in regression analysis by independently the presence of chronic health conditions and the inability to work. In stratified analysis, the EQ-5D-5L LSS discriminates slightly better between participants with different levels of SES compared to the EQ VAS.